Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources.

Background and Objectives Pediatricians face numerous challenges in providing care for children with special health care needs (CSHCN). Few studies have described health care resources available to support pediatricians to care for CSHCN. This study investigated available resources to care for CSHCN and factors associated with having a greater proportion of CSHCN in practice. Methods We conducted a statewide survey of active members of the American Academy of Pediatrics in California to study pediatric subspecialty care access, community and office resources and practice barriers. We performed a logistic regression model on having an "above average proportion" of CSHCN in practice, adjusting for demographics, practice type (rural vs. suburban/urban) and medical resources, care satisfaction, and ease of subspecialty access. Results Our response rate was 50.2% (n = 1290); 75% of respondents reported providing some primary care services, with many primary care pediatricians caring for a high proportion of CSHCN. Pediatricians reported an average of 28% CSHCN in their practices. Rural pediatricians lacked subspecialty access (10-59% reporting no access to the various subspecialties). Factors relating to higher CSHCN in practice included being in academic medical centers and satisfaction in caring for CSHCN. Conclusions Pediatricians report lack of access to mental health services, care coordination and case management. Academic medical centers and higher physician satisfaction in care delivery for CSHCN are associated with more CSHCN in practice. Promoting ways to support pediatricians, such as practice collaboration with behavioral specialists, may be necessary to encourage primary care pediatricians to provide medical homes for CSHCN.

Self-management and Transition to Adult Health Care in Adolescents and Young Adults: A Team Process.

As health care continues to evolve, the need for more effective health care transition (HCT) for all youth, but particularly children with chronic conditions and special health care needs, becomes even more important. With more than 90% of adolescents with chronic medical conditions now surviving into adulthood, suboptimal transition can lead to poorer quality of life and less successful adulthood.Through a series of clinical vignettes, the challenges of HCT are presented herein and accompanied by comments that underscore how these adolescents can best be helped to transition to successful adulthood. Several methods are presented to assess the readiness of adolescents and young adults (AYA) for transition. The process of transition can be divided into 3 stages: 1) setting the stage: initiation of HCT services and transition readiness assessment, 2) moving forward: ongoing provision of HCT services, and 3) reaching the goal: transfer of care and transition to adulthood.Several valuable suggestions for incorporating the HCT process into the health care system and improving HCT programs through a quality improvement (QI) approach are outlined. Future challenges in HCT include developing more precise assessments of transition status or transition readiness, better understanding the status and specific needs of AYA with chronic health care needs, continued program evaluation and QI efforts, and more reliance on patients and families to teach us about the challenges and methods in HCT that most effectively work for them.

The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services.

BACKGROUND: Youth and young adults with special healthcare needs (YASHCN) experience challenges during transition from pediatric to adult care. Prior studies have not examined how community and healthcare resources can work together to assist YASHCN in transitioning from child-focused care and services to adult-oriented providers. OBJECTIVE: The aim of this study was to develop a theoretical understanding of how family, healthcare providers and community supports can assist YASHCN during the transition from pediatric to adult healthcare and services. DESIGN/METHODS: We conducted 41 semi-structured interviews with YASHCN aged 16-25, their family members and healthcare and community providers. We focused our interviews on support mechanisms, both within the traditional healthcare system, and those available in the community. Using grounded theory methods, we performed a multi-step analysis process. RESULTS: The theoretical code "Transition Advocacy" was developed from the data. This theoretical perspective arose from three major categories, which were developed in the analysis: "Fighting for healthcare", "Obtaining resources", and "Getting ready to transition". Transition Advocacy consists of the presence of, or need for, a healthcare "advocate" who did or can assist the YASHCN with the healthcare transition, particularly to navigate complex health or community services. The "advocate" role was performed by family members, healthcare or agency professionals, or sometimes the YASHCN themselves. If advocates were identified, youth were more likely to obtain needed services. CONCLUSIONS: Parents, health providers, and community agencies are potentially well-poised to assist transitioning YASHCN. Efforts to encourage development of strong advocacy skills will facilitate better transitions for YASHCN.

Post-Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) After Infection During Pregnancy.

OBJECTIVE: To estimate the prevalence of post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection (PASC) after infection with SARS-CoV-2 during pregnancy and to characterize associated risk factors. METHODS: In a multicenter cohort study (NIH RECOVER [Researching COVID to Enhance Recovery]-Pregnancy Cohort), individuals who were pregnant during their first SARS-CoV-2 infection were enrolled across the United States from December 2021 to September 2023, either within 30 days of their infection or at differential time points thereafter. The primary outcome was PASC, defined as score of 12 or higher based on symptoms and severity as previously published by the NIH RECOVER-Adult Cohort, at the first study visit at least 6 months after the participant's first SARS-CoV-2 infection. Risk factors for PASC were evaluated, including sociodemographic characteristics, clinical characteristics before SARS-CoV-2 infection (baseline comorbidities, trimester of infection, vaccination status), and acute infection severity (classified by need for oxygen therapy). Multivariable logistic regression models were fitted to estimate associations between these characteristics and presence of PASC. RESULTS: Of the 1,502 participants, 61.1% had their first SARS-CoV-2 infection on or after December 1, 2021 (ie, during Omicron variant dominance); 51.4% were fully vaccinated before infection; and 182 (12.1%) were enrolled within 30 days of their acute infection. The prevalence of PASC was 9.3% (95% CI, 7.9-10.9%) measured at a median of 10.3 months (interquartile range 6.1-21.5) after first infection. The most common symptoms among individuals with PASC were postexertional malaise (77.7%), fatigue (76.3%), and gastrointestinal symptoms (61.2%). In a multivariable model, the proportion PASC positive with vs without history of obesity (14.9% vs 7.5%, adjusted odds ratio [aOR] 1.65, 95% CI, 1.12-2.43), depression or anxiety disorder (14.4% vs 6.1%, aOR 2.64, 95% CI, 1.79-3.88) before first infection, economic hardship (self-reported difficulty covering expenses) (12.5% vs 6.9%, aOR 1.57, 95% CI, 1.05-2.34), and treatment with oxygen during acute SARS-CoV-2 infection (18.1% vs 8.7%, aOR 1.86, 95% CI, 1.00-3.44) were associated with increased prevalence of PASC. CONCLUSION: The prevalence of PASC at a median time of 10.3 months after SARS-CoV-2 infection during pregnancy was 9.3% in the NIH RECOVER-Pregnancy Cohort. The predominant symptoms were postexertional malaise, fatigue, and gastrointestinal symptoms. Several socioeconomic and clinical characteristics were associated with PASC after infection during pregnancy. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov, NCT05172024.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

Peripheral muscle weakness in RASopathies.

INTRODUCTION: RASopathies are a group of genetic conditions due to alterations of the Ras/MAPK pathway. Neurocutaneous findings are hallmark features of the RASopathies, but musculoskeletal abnormalities are also frequent. The objective was to evaluate handgrip strength in the RASopathies. METHODS: Individuals with RASopathies (e.g., Noonan syndrome, Costello syndrome, cardio-facio-cutaneous [CFC] syndrome, and neurofibromatosis type 1 [NF1]) and healthy controls were evaluated. Two methods of handgrip strength were tested: GRIP-D Takei Hand Grip Dynamometer and the Martin vigorimeter. A general linear model was fitted to compare average strength among the groups, controlling for confounders such as age, gender, height, and weight. RESULTS: Takei dynamometer: handgrip strength was decreased in each of the syndromes compared with controls. Decreased handgrip strength compared with sibling controls was also seen with the Martin vigorimeter (P < 0.0001). CONCLUSIONS: Handgrip strength is decreased in the RASopathies. The etiology of the reduced muscle force is unknown, but likely multifactorial.

Investigating Protective Factors Associated With Mental Health Outcomes in Sexual Minority Youth.

PURPOSE: The aim of this study is to identify and evaluate the efficacy of adolescent protective factors against mental health (MH) outcomes in young adulthood of sexual minority identifying youth (SMY). METHODS: Using data from the National Longitudinal Study of Adolescent to Adult Health, we identified potential protective factors (e.g., individual factors like self-esteem, family factors like family communication, and community factors like caring teachers) at baseline (1994) when the sample was school-aged for SMY. SMY included those who identified their sexual identity as mostly heterosexual, bisexual, mostly homosexual, or 100% homosexual. MH outcomes (depression, anxiety, or suicidality) were assessed at 14-year follow-up. RESULTS: Approximately 14,800 youth completed baseline and follow-up surveys, where 13.5% identified as SMY. Of SMY, 57% had a MH outcome compared to 37% of non-SMY (p < .05). Not all factors were protective for SMY. At the individual level, emotional well-being (adjusted odds ratio [AOR] .56, 95% confidence interval [CI] .41-.78) and self-esteem (AOR .79, 95% CI .66-.95) were found to be protective for MH outcomes in regression models. At the family level, family connectedness (AOR .82, 95% CI .71-.95) was found to be protective. At the community level, school connectedness (AOR .78, 95% CI .66-.92) and caring teachers (AOR .76, 95% CI .58-.99) were found to be protective for SMY. CONCLUSION: Factors at the individual, family, and community (e.g., caring teachers) levels appear to be protective against MH outcomes unique to SMY. Developing interventions focused on protective factors have potential to prevent health disparities.

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

Are We Reaching Everyone? A Cross-Sectional Study of Telehealth Inequity in the COVID-19 Pandemic in an Urban Academic Pediatric Primary Care Clinic.

The COVID-19 (coronavirus disease 2019) pandemic brought rapid expansion of pediatric telehealth to maintain patient access to care while decreasing COVID-19 community spread. We designed a retrospective, serial, cross-sectional study to investigate if telehealth implementation at an academic pediatric practice led to disparities in health care access. Significant differences were found in pre-COVID-19 versus during COVID-19 patient demographics. Patients seen during COVID-19 were more likely to be younger, White/Caucasian or Asian, English speaking, and have private insurance. They were less likely to be Black/African American or Latinx and request interpreters. Age was the only significant difference in patient demographics between in-person and telehealth visits during COVID-19. A multivariate regression showed older age as a significant positive predictor of having a video visit and public insurance as a significant negative predictor. Our study demonstrates telehealth disparities based on insurance existed at our clinic as did inequities in who was seen before versus during COVID-19.

Adherence to Child Attention-Deficit/Hyperactivity Disorder Treatment Guidelines in Medical Homes-Results from a National Survey.

OBJECTIVE: Having primary care delivered through a medical home is believed to improve mental health care delivery to children. Children with attention-deficit/hyperactivity disorder (ADHD) are commonly treated in pediatric practices, yet little is known about ADHD treatment patterns in medical homes. Our objective was to assess for treatment variation depending on parent-perceived medical home (PPMH) status. We hypothesized that having a PPMH would be associated with receiving ADHD treatments recommended by clinical guidelines. METHODS: We used the 2016 National Survey of Children's Health-a nationally representative cross-sectional survey of children in the United States. Analyses included an unweighted sample of 4,252, representing 5.4 million children aged 3 to 17 years with parent-reported ADHD. Child characteristics were analyzed using descriptive statistics. Associations between ADHD treatment types and PPMH status were assessed using a multinomial logistic regression, adjusting for child characteristics. RESULTS: Having a PPMH was associated with increased prevalence odds of children's receipt of medications alone for ADHD (vs no treatment). The prevalence odds of receiving behavioral treatment alone (vs medications alone) for ADHD decreased by 43% when children had a PPMH (95% confidence interval, 0.38-0.85, p = 0.01). PPMH status was not associated with a statistically significant difference in prevalence odds of receiving combination treatment (vs medications alone) for pediatric ADHD. CONCLUSION: Having a PPMH was associated with children's receipt of ADHD medications alone, but not behavioral treatments. Our findings suggest that medical homes may need further improvement to ensure that children with ADHD receive treatments as recommended by clinical guidelines.

Seeking equilibrium: The experiences of parents of infants and toddlers who are deaf/hard-of-hearing.

PURPOSE: To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH). METHODS: We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted. RESULTS: Four focus groups (n= 33) and six semi-structured interviews (n= 7) were conducted. The major theoretical code found was the "Search for Equilibrium" in parenting which arose from the three main categories of the caregiver role/experience: (1) being a parent - modifying parenting style as a result of their child's hearing loss, (2) being a mediator - modulating and filtering interactions between their child and their child's environment, and (3) being a navigator - managing the logistics of the medical and educational system. CONCLUSIONS: For hearing parents, the diagnosis of hearing loss requires changes in multiple domains of parenting. Support in each of these areas is critical for parents to restore a sense of equilibrium that is central to their quality of life. This framework provides a way to categorize parent experiences and may act as a template for focused interventions in the three identified domains.

Care Quality and Spending Among Commercially Insured Children With Disabilities.

OBJECTIVE: To identify opportunities to improve care value for children with disabilities (CWD), we examined CWD prevalence within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions. METHODS: This cross-sectional study comprised 1,118,081 person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged 1 to 19years old during 2008 to 2012. We combined the newly developed and validated Children with Disabilities Algorithm with the Pediatric Medical Complexity Algorithm to identify CWD and non-CWD subgroups. We used 14 validated or National Quality Forum-endorsed measures to assess outpatient care quality and paid claims to examine annual plan spending levels and components. RESULTS: CWD constituted 4.5% of all enrollees. Care quality for CWD was between 11% and 59% for 8 of 14 quality measures and >80% for the 6 remaining measures and was generally comparable to that for non-CWD subgroups. Annual plan spending among CWD was a median and mean 23% and 53% higher than that for children with complex medical conditions without disabilities, respectively; CWD mean and median values were higher than for all other groups as well. CONCLUSIONS: CWD were prevalent in our commercially insured population. CWD experienced suboptimal levels of care, but those levels were comparable to non-CWD groups. Improving the care value for CWD involves a deeper understanding of what higher spending delivers and additional aspects of care quality.

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood.

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is known about how comfortable physicians are caring for this population. OBJECTIVES: To assess the comfort of general internists and general pediatricians in treating young adult patients with chronic illnesses originating in childhood as well as the factors associated with comfort. PARTICIPANTS: In a random sample, 1288 of 2434 eligible US general internists and pediatricians completed a mailed survey (response rate = 53%). METHODS: We measured respondents' comfort level in providing primary care for a patient with sickle cell disease (SCD) or cystic fibrosis (CF). We also measured levels of disease familiarity, training and subspecialty support, as well as individual physician characteristics. RESULTS: Fifteen percent of general internists reported being comfortable as the primary care provider for adults with CF and 32% reported being comfortable providing primary care for adults with SCD, compared with 38% of pediatricians for CF (p < .001) and 35% for SCD (p > 0.05). Less than half of general internists felt that their specialty should take primary care responsibility for adult patients with CF and SCD. CONCLUSIONS: A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as CF and SCD. Efforts to increase treatment comfort among providers may help with the transition to adult-focused care for the growing numbers of young adults with complex chronic conditions.

Care Coordination and Comprehensive Electronic Health Records are Associated With Increased Transition Planning Activities.

OBJECTIVE: Youth with special health care needs (YSHCN) require assistance from their pediatricians to transition to adult care. There are few data on what transition resources pediatricians have. In this article we discuss whether care coordination and/or comprehensive electronic health record (CEHR) implementation are associated with improved transition processes. METHODS: Using the American Academy of Pediatrics Periodic Survey #79, we report whether practices generated written transition plans, assisted in finding adult providers, and discussed confidentiality issues. Descriptive statistics and a logistic regression model were done to evaluate whether CEHR, care coordination, or practice and physician characteristics were associated with improved transition planning. RESULTS: Transition planning support in practices is low. Pediatricians with any care coordinator report more written transition plans for YSHCN (23% vs 6%; P < .001), assistance identifying adult providers (59% vs 39%; P < .001), and discussing confidentiality issues (50% vs 33%; P < .001). Pediatricians with a CEHR compared with those without are more likely to report written transition plans for YSHCN (24% vs 12%; P < .05) and discussing confidentiality issues (51% vs 39%; P < .05). In the logistic regression model, having care coordination (adjusted odds ratio, 11.1; 95% confidence interval, 5.9-21.3) and CEHR (adjusted odds ratio, 2.6; 95% confidence interval, 1.5-5.0) were independently associated with higher odds of having a written transition plan. CONCLUSIONS: Only 1 in 5 pediatricians have a transition coordinator in their practice and just 15% have a CEHR, even as these resources are associated with improved transition processes for YSHCN. Policy decisions should be made to help practices with supports, such as care coordination and electronic health record implementation, to improve transitions to adulthood.

Prevalence and determinants of insulin resistance among U.S. adolescents: a population-based study.

OBJECTIVE: We sought to examine the distribution of insulin and homeostasis model assessment of insulin resistance (HOMA-IR) and associations of HOMA-IR with sex, race/ethnicity, age, and weight status, as measured by BMI, among U.S. adolescents. RESEARCH DESIGN AND METHODS: Of 4,902 adolescents aged 12-19 years who participated in the National Health and Nutrition Examination Survey 1999-2002, analysis was performed for a nationally representative subsample of 1,802 adolescents without diabetes who had fasting laboratory measurements. The main outcome measure was HOMA-IR, calculated from fasting insulin and glucose and log transformed for multiple linear regression analyses. RESULTS: In adjusted regression models that included age and weight status, girls had higher HOMA-IR than boys and Mexican-American children had higher HOMA-IR levels than white children. There were no significant differences in adjusted HOMA-IR between black and white children. Obese children (BMI >/=95th percentile) had significantly higher levels of HOMA-IR compared with children of normal weight (BMI <85th percentile) in adjusted comparisons (mean HOMA-IR 4.93 [95% CI 4.56-5.35] vs. 2.30 [2.21-2.39], respectively). Weight status was by far the most important determinant of insulin resistance, accounting for 29.1% of the variance in HOMA-IR. The prevalence of insulin resistance in obese adolescents was 52.1% (95% CI 44.5-59.8). CONCLUSIONS: Obesity in U.S. adolescents represents the most important risk factor for insulin resistance, independent of sex, age, or race/ethnicity. The prevalence of insulin resistance in obese children foreshadows a worrisome trend for the burden of type 2 diabetes in the U.S.

Pediatricians' Comfort Level in Caring for Children With Special Health Care Needs.

BACKGROUND: Few studies have investigated pediatrician attitudes about providing primary medical care for children with special health care needs. The objective of this study was to determine pediatrician perspectives on their comfort level in providing care and on where the medical home should be for children with chronic medical and developmental conditions. METHODS: Survey of pediatricians in California in 2014. Pediatricians were randomized to receive surveys featuring either a case of a child with a chronic medical (neurofibromatosis) or a developmental condition (autism). They were then asked about their comfort level in providing primary care for the child. We developed logistic regression models to adjust for practice and provider factors, and availability of family social resources. RESULTS: The survey response rate was 50.2%. Primary care pediatricians expressed more comfort than nonprimary care pediatricians in providing a medical home for a child with chronic medical or developmental condition (range, 84%-92% comfortable vs 58%-79% comfortable), respectively. All pediatricians expressed more comfort providing care for a child with autism than neurofibromatosis. Nearly all primary care pediatricians (90%) believed that the medical home should be in pediatric primary care practice. Pediatrician comfort in becoming a medical home was higher when the family had more social resources. CONCLUSIONS: Most pediatricians endorse that the medical home for children with special health care needs be in the primary care setting. Improving access to subspecialty care and providing resources, such as case management, to address family social complexity might raise pediatrician comfort in providing primary care to children with medical and developmental conditions.

Familial Caregiver and Physician Perceptions of the Family-Physician Interactions During Interfacility Transfers.

BACKGROUND AND OBJECTIVES: Children with special health care needs (CSHCN) have frequent hospitalizations and high specialty care utilization. If they initially present to a medical facility not capable of providing their definitive care, these children often experience an interfacility transfer. This transition has potential to impose hardships on familial caregivers. The goal of this study was to explore family-physician interactions during interfacility transfers from the perspectives of referring and accepting physicians and familial caregivers, and then develop a conceptual model for effective patient- and family-centered interfacility transfers that leverages the family-physician interaction. METHODS: This single-center qualitative study used grounded theory methods. Interviews were conducted with referring and accepting physicians and the familial caregivers of CSHCN. Four researchers coded the data. The research team reached consensus on the major categories and developed a conceptual model. RESULTS: Eight referring physicians, 9 accepting physicians, and 8 familial caregivers of 25 CSHCN were interviewed. All participants stated that family-physician interactions during transfers should be improved. Three main categories were developed: shared decision-making, provider awareness of families' resource needs, and communication. The conceptual model showed that 2-way communication allows providers to gain awareness of families' needs, which can facilitate shared decision-making, ultimately enhancing effective coordination and patient- and family-centered transfers. CONCLUSIONS: Shared decision-making, provider awareness of families' resource needs, and communication are perceived as integral aspects of the family-physician interaction during interfacility transfers. Transfer systems should be reengineered to optimize family-physician interactions to make interfacility transfers more patient- and family-centered.

Receiving Providers' Perceptions on Information Transmission During Interfacility Transfers to General Pediatric Floors.

BACKGROUND: Pediatric patients can present to a medical facility and subsequently be transferred to a different hospital for definitive care. Interfacility transfers require a provider handoff across facilities, posing risks that may affect patient outcomes. OBJECTIVES: The goal of this study was to describe the thoroughness of information transmission between providers during interfacility transfers, to describe perceived errors in care at the posttransfer facility, and to identify potential associations between thoroughness of information transmission and perceived errors in care. METHODS: We performed an exploratory prospective cohort study on communication practices and patient outcomes during interfacility transfers to general pediatric floors. Data were collected from provider surveys and chart review. Descriptive statistics were used to summarize survey responses. Logistic regression was used to analyze the association of communication deficits with odds of having a perceived error in care. RESULTS: A total of 633 patient transfers were reviewed; 218 transport command physician surveys and 217 frontline provider surveys were completed. Transport command physicians reported higher proportions of key elements being included in the verbal handoff compared with frontline providers. The written key element transmitted with the lowest frequency was a summary document (65.2%), and 13% of transfers had at least 1 perceived error in care. Transfers with many deficits were associated with higher odds of having a perceived error in care. CONCLUSIONS: Information transmission during pediatric transfers is perceived to be inconsistently complete. Deficits in the verbal and written information transmission are associated with odds of having a perceived error in care.

Quality of Primary Care for Children With Disabilities Enrolled in Medicaid.

OBJECTIVE: The quality of primary care delivered to Medicaid-insured children with disabilities (CWD) is unknown. We used the newly validated CWD algorithm (CWDA) to examine CWD prevalence among Medicaid enrollees 1 to 18 years old, primary care quality for CWD, and differences in primary care quality for CWD and non-CWD. METHODS: Cross-sectional study using 2008 Medicaid Analytic eXtract claims data from 9 states, including children with at least 11 months of enrollment (N = 2,671,922 enrollees). We utilized CWDA to identify CWD and applied 12 validated or endorsed pediatric quality measures to assess preventive/screening, acute, and chronic disease care quality. We compared quality for CWD and non-CWD unmatched and matched on age, sex, and number of nondisabling chronic conditions and outpatient encounters. RESULTS: CWDA identified 5.3% (n = 141,384) of our study population as CWD. Care quality levels for CWD were below 50% on 8 of 12 quality measures (eg, adolescent well visits [44.9%], alcohol/drug treatment engagement [24.9%]). CWD care quality was significantly better than the general population of non-CWD by +0.9% to +15.6% on 9 measures, but significantly worse for 2 measures, chlamydia screening (-3.4%) and no emergency department visits for asthma (-5.0%; all P < .01 to .001). Differences in care quality between CWD and non-CWD were generally smaller or changed direction when CWD were compared to a general population or matched group of non-CWD. CONCLUSIONS: One in 20 Medicaid-insured children is CWD, and the quality of primary care delivered to CWD is suboptimal. Areas needing improvement include preventive/screening, acute care, and chronic disease management.

Inpatient health care use among adult survivors of chronic childhood illnesses in the United States.

OBJECTIVES: To describe the inpatient length of stay and related charges for adults in the United States with childhood-onset chronic disease and to examine patterns with respect to different hospital settings. DESIGN: We analyzed data from the 2002 Nationwide Inpatient Sample, a nationally representative data set of hospital discharges. We performed a case-mix-adjusted, sample-weighted regression analysis as well as descriptive statistics of hospital use among adults with childhood-onset chronic disease. SETTING: United States. PARTICIPANTS: We identified hospitalizations for persons aged 18 years or older with a diagnosis of complex congenital heart disease, cystic fibrosis, sickle cell disease, or spina bifida. Main Exposure Childhood chronic illness. MAIN OUTCOME MEASURES: Length of stay and total charges among pediatric, adult, and mixed hospitals. RESULTS: In multivariate adjusted analyses, patients with complex congenital heart disease and cystic fibrosis had a significantly longer length of stay in pediatric hospitals than in adult or mixed hospitals (P<.001); no similar difference was found for sickle cell disease and spina bifida. For all of the 4 conditions, hospital charges were significantly greater in pediatric hospitals than in adult or mixed hospitals (P<.001 for cystic fibrosis, complex congenital heart disease, and sickle cell disease, and P<.01 for spina bifida). CONCLUSIONS: The vast majority of persons who have survived to adulthood with complex congenital heart disease, cystic fibrosis, spina bifida, or sickle cell disease are hospitalized in hospitals that predominantly care for adults, where charges for care appear to be lower than in pediatric hospitals.